Reacting Immediately
It was May 2021, and Alexi Raglin had big plans for the summer. He was about to graduate from Bloomington North High School and was looking forward to heading to college at Johnson and Wales in Providence, Rhode Island, that fall. He had recently come back from a visit to the campus when he began to feel sick.
It started with a migraine. With symptoms persisting and a stubborn, high temperature developing, Alexi’s father, Jack Raglin, took his son to their local hospital in Bloomington.
Showing signs of a fatal blood condition, Alexi was transported to Riley. Alexi’s red blood cells were getting destroyed on a constant basis, obligating Kamal Abulebda, M.D., and his team to give Alexi blood transfusions as they worked quickly to diagnose what was happening.
Alexi had hemophagocytic lymphohistiocytosis (HLH). Jessica Seaborn, M.D., Alexi’s doctor and a pediatric hematologist at Riley, explains that HLH is when the immune system is dysregulated, and a person has hyperinflammation. This inflammation from a person’s own cells damages tissue and organs.
“It’s a very rare condition yet extremely serious and very fatal if not recognized and treated,” Dr. Abulebda said. “We had to react immediately. That included some steroids and some actual chemotherapy that target these cells and control this dysregulated immune response in the body.”
In two months after undergoing chemotherapy and corticosteroid treatment, Alexi lost 50 pounds.
“It was a tough decision early on to treat him with steroids,” Dr. Abulebda said. “This medicine is lifesaving to stop the HLH. At the same time, there’s a chance of consequences.”
The steroids were eating up both of Alexi’s femur bones. After finishing treatments by August that year, terrible hip pain led Alexi’s doctors to an MRI. It showed near collapse of both hips, resulting in him being on crutches for the next five months. Instead of moving into college that fall, Alexi needed two core decompression surgeries, and at the end of all that, he was going to need a hip replacement.
“The hip replacement improved his quality of life dramatically,” Jack said. “What happened at Riley not only saved him physically, it opened these doors for him. He’s a different person today.”
Alexi is currently in school studying sustainable food systems and culinary science at Johnson and Wales and has one more year. Last summer, he built vegetable garden beds and led education sessions at John Hope Settlement House, a community-based organization serving vulnerable children in Providence. He also competed in his first body building competition in May in Massachusetts.
“In the end, he really has become a better version of himself,” Alexi’s mother, Tatiana Kolovou, said. “He’ll be turning 21 this summer, and it’s hard to believe he’s had such a challenging and involved life. Resilience is the word I think of when I think of him.”
Tatiana and Jack describe their experience with Riley doctors as remarkable. It’s why they are doing what they can to help fix things for the next Riley kid.
“How do I thank them for saving our son’s life? There are no words to use,” Tatiana said. “At that point, I said ‘The only way we can thank Riley is to pay it forward.’ I encourage anyone who has a way to say thank you and pay it forward to do it with Riley because they will make sure that it has the biggest impact on the most amount of children in our state and beyond.”